mary63
04-16-2008, 04:16 AM
Hi there all..just wondered if anyone feels any benefit from any vitamins or such??
I am taking vit B, something called Adrenal support, Flax oil and something with polypodium in it!
I would be willing to try anything.
Asked the Neuro and GP if i could try some mild steroids but they said "noooo"- basically have to wait for a diagnosis- which can take ages and in the meantime hope permanent damage isn't happening (though i am sure it must be if my feet and other bits are tingling away...)
It seems that you have to become almost totally incapacitated here in order to be offered some form of medication...
My Neuro asked to see me again as he had lost the dictation notes of my $400 consult.. i said no- whats the point. He can't diagnose me in his office or offer any drugs so why the hek go back there. (got my MRI booking however....)
I am taking vit B, something called Adrenal support, Flax oil and something with polypodium in it!
I would be willing to try anything.
Asked the Neuro and GP if i could try some mild steroids but they said "noooo"- basically have to wait for a diagnosis- which can take ages and in the meantime hope permanent damage isn't happening (though i am sure it must be if my feet and other bits are tingling away...)
It seems that you have to become almost totally incapacitated here in order to be offered some form of medication...
My Neuro asked to see me again as he had lost the dictation notes of my $400 consult.. i said no- whats the point. He can't diagnose me in his office or offer any drugs so why the hek go back there. (got my MRI booking however....)
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Nenu
04-16-2008, 05:22 AM
Tryptophan! :)
I got mine through a natural health store. Compounded and sold there.
I got mine through a natural health store. Compounded and sold there.
MSNik
04-16-2008, 08:32 AM
Tumeric is a natural anti-inflammatory sold in most health food stores- it is specific to help tingling, numbness...I take 800 mgs daily- it does help to a certain extent.
sunshine149
04-16-2008, 11:42 PM
i take a variety of vitamins (d, b, magnesium, selenium, copper, zinc, manganese and flax oil, sometimes a fish oil or evening primrose oil). i also take a variety of chinese herbs, under the direction of a chinese herbalist: 6 gentlemen, 6 flavor and free and easy wanderer. i also have regular acupuncture (at least once a month).
i'm not on a med for MS, not the CRAB drugs
i'm not on a med for MS, not the CRAB drugs
topjars
04-17-2008, 05:02 AM
Fish oil tabs, green tea and the odd stint of MJ
mary63
04-17-2008, 07:14 AM
Awesome- thanks everyone...
boy i have spent so much on pills and potions since this started!
boy i have spent so much on pills and potions since this started!
Nenu
04-17-2008, 07:39 AM
Awesome- thanks everyone...
boy i have spent so much on pills and potions since this started!
I once came out of my natural health store to the tune of $300 :( I know all too well about these costs.
Now I'm taking a compound capsule combining many beneficial vitamins/supplements/minerals, for $50 a month, which is much easier to afford.
My tryptophan ends up being about $20 for 90 capsules, but it is covered by my insurance through work.
boy i have spent so much on pills and potions since this started!
I once came out of my natural health store to the tune of $300 :( I know all too well about these costs.
Now I'm taking a compound capsule combining many beneficial vitamins/supplements/minerals, for $50 a month, which is much easier to afford.
My tryptophan ends up being about $20 for 90 capsules, but it is covered by my insurance through work.
Bearygood
04-17-2008, 05:24 PM
mary, I do not take DMDs for my MS. I do take supplements but really don't think of them as natural meds. ;) My approach is to take things that deal with anti-inflammation (Omega 3s, Turmeric (curcumin)), oxidative stress and supporting the blood-brain barrier.
It's great to take cues from others but I think it's also important to do your own research so you understand the whys of what you're doing.
Good luck to you. :)
It's great to take cues from others but I think it's also important to do your own research so you understand the whys of what you're doing.
Good luck to you. :)
amy2705
04-17-2008, 06:40 PM
I agree that certain vitamins, etc. can be really good. But just to reiterate the importance of doing your own research, my neuro gave me a book that has an entire section on what "natural" remedies to avoid (Ginko, Echinacea, etc.). As an example, I made a joke about instead of the flu shot maybe I'd just stock up on ColdFx ... that went down like a lead balloon and I was told in no uncertain terms that I absolutely couldn't take ColdFx. Who knew! So it's also important to know what you shouldn't or can't take if you've got MS and to be careful about what you're mixing together.
JockMcTavish
04-18-2008, 08:35 PM
I'm seeing a homeo/naturapath - pretty interesting trip. Been on homeopathic medicine for a week now - the doctor saif I'd notice some particular things happening and surprisingly he's pretty accurate. I'll give anything a whirl to avoid those nasty drugs, but if this ain't working, that's what I'll be on. Next MRi is due in 4 months - fingers crossed no new lesions!
mary63
04-22-2008, 05:26 AM
yes it can be dangerous trying anything- i read that something called polypodium had helped someones symptoms- i found it in a product that also has vitamin A and Retinol in it- even bought it online- which i have never done before ( $40NZ)- then on the news the other day heard that Vit A is not good to take as a supplement- Don't want to take those pills anymore. Guess i am so desperate to stop this tingling i would do almost anything......(my 1st MRI is in July...gulp)
Nenu
04-22-2008, 06:14 AM
Don't fret the MRI Mary. MRI is a very easy procedure for the patient :)
AllyG
04-23-2008, 09:43 AM
I read a post there where someone said they take green tea - I dont think this is advised. Isnt green tea an immune boosting herb - I think like echinecea (spelling??), we're not supposed to take these.
If I'm wrong, apologies. I'd stopped drinking green tea after hearing this, I'll go back on it if its harmless!
Evening Primrose Oil is meant to be good for MS, both my aunt & I were prescribed it by our Neuros (its called Naudicelle). Fairly large doses of it too!
If I'm wrong, apologies. I'd stopped drinking green tea after hearing this, I'll go back on it if its harmless!
Evening Primrose Oil is meant to be good for MS, both my aunt & I were prescribed it by our Neuros (its called Naudicelle). Fairly large doses of it too!
MSNik
04-23-2008, 02:21 PM
Ally, youre right GREEN TEA IS BAD for us. Anything which stimulates the immune system is not recommended....echineacea (for reducing colds) is also a bad one- one to avoid..
Bearygood
04-23-2008, 03:42 PM
I am not sure that this is correct about Green tea. It's actually recommended for arthritis (also inflammatory). It obviously has anti-oxidant properties but I'm not under the impression it falls into the category of immune stimulator or if it's immune modulating. I've been meaning to look into this more so thanks for the reminder!
MSNik
04-23-2008, 07:56 PM
Beary , let us know what you find out...my info is based on my MS specialist telling me to STOP drinking it as of a few months ago- as well as my Neuro telling me that its bad for me. My mom has Rheumatoid Arthritis and was told not to touch it, by the way...
My Nutritionist has also recommended that I avoid it more than once a week..
So, if you get more info, please pass it on.
Nikki
My Nutritionist has also recommended that I avoid it more than once a week..
So, if you get more info, please pass it on.
Nikki
thnkpos
04-23-2008, 08:42 PM
hi all, thought id ad my two sense, i got this book off of my rebif field nurse, its dietary supplements for ms, (im hoping i can write this on the board?)
under green tea,
green tea contains polyphenols which have antioxidant effects, and caffeine10-50 mg caffeine/cup). In modest doses (up to 250 mg daily), caffeine is usually well tolerated and may improve mental alertness. The urinary irritant and diuretic actions of caffeine may worsen ms associated bladder difficulties. Also, caffeine may be a risk factor for osteoporosis, a condition to which ms patients may be especially prone.
i have been going to a herbalist, im also taking rebif,
now im taking GNC brand silver for 14 days for sinuses (i contantly have sinus infections)
im taking flax seed, choline inositol, grapeseed oil, and i will be adding sinus support and cell detox, she did say to take echnacea (but im alittle leery of this one she said take half the dose) still thinking about that one. probabaly will not take.
do i believe these are a cure all? NO
but im trying what seems to help....................
:)
tammy
under green tea,
green tea contains polyphenols which have antioxidant effects, and caffeine10-50 mg caffeine/cup). In modest doses (up to 250 mg daily), caffeine is usually well tolerated and may improve mental alertness. The urinary irritant and diuretic actions of caffeine may worsen ms associated bladder difficulties. Also, caffeine may be a risk factor for osteoporosis, a condition to which ms patients may be especially prone.
i have been going to a herbalist, im also taking rebif,
now im taking GNC brand silver for 14 days for sinuses (i contantly have sinus infections)
im taking flax seed, choline inositol, grapeseed oil, and i will be adding sinus support and cell detox, she did say to take echnacea (but im alittle leery of this one she said take half the dose) still thinking about that one. probabaly will not take.
do i believe these are a cure all? NO
but im trying what seems to help....................
:)
tammy
Bearygood
04-24-2008, 01:24 AM
Hi, Tammy. Oxidative stress is one of the things that often come up as a potential culprit in MS. If you subscribe to this concept, than it stands to reason that anti-oxidants might be helpful. I take grape seed extract as well, in a capsule. Also, whather this turns out to be true or not, some studies have just been released about coffee possibly being helpful for MS. (!) I would question the echinacea though. Everything I've seen on it regards it being an immune stimulator, not modulator.
Nikki, when I get around to researching green tea more thoroughly I will definitely post.
Nikki, when I get around to researching green tea more thoroughly I will definitely post.
Nenu
04-24-2008, 06:27 AM
Also, whather this turns out to be true or not, some studies have just been released about coffee possibly being helpful for MS. (!)
You hear that ladies?? :D :D :D
My dentist wanted me to ditch coffee, my nutritionist is a coffee-holic himself. Never discouraged drinking it. If that's true Beary, I have years of training lol!
You hear that ladies?? :D :D :D
My dentist wanted me to ditch coffee, my nutritionist is a coffee-holic himself. Never discouraged drinking it. If that's true Beary, I have years of training lol!
mary63
04-24-2008, 08:47 AM
Don't fret the MRI Mary. MRI is a very easy procedure for the patient :)
hi there-i'm ok about the procedures- its what they are going to find!!! i hate to think all these people will see all these lesions and feel really sorry for me...the odd person i have mentioned about MS to have said oh i hope you don't have that- its such a horrible disease- gee thanks! no wonder we don't like to talk about it!!! I soo hate the thought of anyone feeling sorry for me- unbearable. Sorry this is off my original topic...but anyone relate?? i feel like people are either thinking i am imagining the disease or feeling sorry-!! grrrrrrrrr
hi there-i'm ok about the procedures- its what they are going to find!!! i hate to think all these people will see all these lesions and feel really sorry for me...the odd person i have mentioned about MS to have said oh i hope you don't have that- its such a horrible disease- gee thanks! no wonder we don't like to talk about it!!! I soo hate the thought of anyone feeling sorry for me- unbearable. Sorry this is off my original topic...but anyone relate?? i feel like people are either thinking i am imagining the disease or feeling sorry-!! grrrrrrrrr
amy2705
04-24-2008, 08:54 AM
You hear that ladies?? :D :D :D
My dentist wanted me to ditch coffee, my nutritionist is a coffee-holic himself. Never discouraged drinking it. If that's true Beary, I have years of training lol!
Hurray! As a fellow coffee-holic that's music to my ears! On a serious note, I've never found that coffee brings on any symptoms (aside from keeping me awake at work!) ;)
Interesting about the green tea! Might explain why I've felt crappy everytime I've had Yerba Mate. Please do post if you find out anything.
My dentist wanted me to ditch coffee, my nutritionist is a coffee-holic himself. Never discouraged drinking it. If that's true Beary, I have years of training lol!
Hurray! As a fellow coffee-holic that's music to my ears! On a serious note, I've never found that coffee brings on any symptoms (aside from keeping me awake at work!) ;)
Interesting about the green tea! Might explain why I've felt crappy everytime I've had Yerba Mate. Please do post if you find out anything.
Nenu
04-24-2008, 08:58 AM
I can sympathize Mary. I was dreading hearing "MS". I had convinced myself out of that possibility, and nearly ditched out on my LP after I already had the MRI results. Honestly, MS isn't a favorable diagnosis, but there are much, much worse diseases out there. MS unlike some diseases gets a lot of attention, and there are options, and a great network of people :)
Nenu
04-24-2008, 08:59 AM
I shouldn't have left the men out of the coffee discussion... I just know a lot of ladies who post here have definitely expressed their love of the java ;)
Bearygood
04-24-2008, 09:52 AM
Mary, this is one of the reasons I have chosen to not disclose to many people. I've found that so many people don't really know about MS -- I was one of those people before I was dxed with it! MS is certainly capable of being a nasty disease and the unknown is rough for us ALL. Please do know that the disease course for each of us is unpredictable, at least at this time, but I believe the current statistics are that less than 25% of the MS population will become disabled.
Re: MRIs, they're actually okay for me now but that's because of having quite a few of them under my belt now -- and also valium. Best other tip I ever got was to close your eyes before they roll you in and keep them closed until they roll you out. :)
hi there-i'm ok about the procedures- its what they are going to find!!! i hate to think all these people will see all these lesions and feel really sorry for me...the odd person i have mentioned about MS to have said oh i hope you don't have that- its such a horrible disease- gee thanks! no wonder we don't like to talk about it!!! I soo hate the thought of anyone feeling sorry for me- unbearable. Sorry this is off my original topic...but anyone relate?? i feel like people are either thinking i am imagining the disease or feeling sorry-!! grrrrrrrrr
Re: MRIs, they're actually okay for me now but that's because of having quite a few of them under my belt now -- and also valium. Best other tip I ever got was to close your eyes before they roll you in and keep them closed until they roll you out. :)
hi there-i'm ok about the procedures- its what they are going to find!!! i hate to think all these people will see all these lesions and feel really sorry for me...the odd person i have mentioned about MS to have said oh i hope you don't have that- its such a horrible disease- gee thanks! no wonder we don't like to talk about it!!! I soo hate the thought of anyone feeling sorry for me- unbearable. Sorry this is off my original topic...but anyone relate?? i feel like people are either thinking i am imagining the disease or feeling sorry-!! grrrrrrrrr
Bearygood
04-24-2008, 09:58 AM
Re: coffee, yup, look it up. Just in the news recently. But who knows?
Re: Yerba Mate, that falls into a class by itself. I just looked it up and it puports to be an immune BOOSTER -- maybe that's why you feel bad.
But Yerba Mate, coffee, whatever...no matter what we read or hear, go with your body.
Hurray! As a fellow coffee-holic that's music to my ears! On a serious note, I've never found that coffee brings on any symptoms (aside from keeping me awake at work!) ;)
Interesting about the green tea! Might explain why I've felt crappy everytime I've had Yerba Mate. Please do post if you find out anything.
Re: Yerba Mate, that falls into a class by itself. I just looked it up and it puports to be an immune BOOSTER -- maybe that's why you feel bad.
But Yerba Mate, coffee, whatever...no matter what we read or hear, go with your body.
Hurray! As a fellow coffee-holic that's music to my ears! On a serious note, I've never found that coffee brings on any symptoms (aside from keeping me awake at work!) ;)
Interesting about the green tea! Might explain why I've felt crappy everytime I've had Yerba Mate. Please do post if you find out anything.
april1848
04-24-2008, 04:40 PM
I saw that thing about coffee possibly being good for MS too. It made my day. Finally, some good news! Now I have a medical excuse.
I never heard the Green Tea thing, and I'm glad it was brought up. I drink it sometimes, now I'm stopping.
Mary: I hate being pitied too. I don't tell anyone anymore that I have it. I do have days when I'm mired in self-pity--pathetic but true. But pity from others just drives me crazy. I don't vent to my mom anymore. She either gets mad and tells me to "think positive" or she does the "my poor baby" thing. I know she loves me, but sometimes I just want people to listen and understand, not pity me.
My best friend is great though. She knows me better than anyone else. When I vent to her, she'll comment, but she never pities me. She might say "MS Sucks!" but that's it. I love her.
Time for more coffee!
I never heard the Green Tea thing, and I'm glad it was brought up. I drink it sometimes, now I'm stopping.
Mary: I hate being pitied too. I don't tell anyone anymore that I have it. I do have days when I'm mired in self-pity--pathetic but true. But pity from others just drives me crazy. I don't vent to my mom anymore. She either gets mad and tells me to "think positive" or she does the "my poor baby" thing. I know she loves me, but sometimes I just want people to listen and understand, not pity me.
My best friend is great though. She knows me better than anyone else. When I vent to her, she'll comment, but she never pities me. She might say "MS Sucks!" but that's it. I love her.
Time for more coffee!
Bearygood
04-24-2008, 04:50 PM
April (and others), if you enjoy your green tea, I wouldn't be so quick to stop. I just spent some time reading about green tea being recommended FOR MS because of it's anti-oxidant and possibly even neuro-degenerative properties. If I find a link that fits guidelines I'll post it but in the meantime, there's plenty of info. on MS and green tea out there if you let your fingers do the walking. If I had spent more time on this I'm sure I would've found something to the contrary (as with most things MS related!) but I scanned over 20 articles so far citing potential benefits.
Nenu
04-24-2008, 05:02 PM
Well, some of us gave up coffee thinking it was 'bad' for MS. Granted, I'm sure you can't go overboard with it and have a positive benefit ;)... however, hearing it may be potentially good for MS is nice news. I sure didn't give mine up for longer than 1 month :p
mary63
04-25-2008, 06:08 AM
Hi me again- does anyone take vit B?
Also wondered if flax oil and evening primrose are similar- or whether i should try both-
think i should go see a Naturopath!!
Also wondered if flax oil and evening primrose are similar- or whether i should try both-
think i should go see a Naturopath!!
Nenu
04-25-2008, 08:12 AM
I take vitamin B daily. Several b's in my compound, then I take b12 sublingual separately. I'd give you the amounts I take per, but my suggestion is honestly to see someone knowledgeable in doses, as each person has unique needs when it comes to amounts of each vitamin required.
Shkodekwe
04-25-2008, 03:52 PM
I am curious to know if anyone uses glisoedin. I have read of the antioxidant values and am wondering if it has been tried with MS.
mary63
04-27-2008, 04:32 AM
I am curious to know if anyone uses glisoedin. I have read of the antioxidant values and am wondering if it has been tried with MS.
hi- i've never heard of it?
Has anyone heard of polypodium?
hi- i've never heard of it?
Has anyone heard of polypodium?
Nenu
04-27-2008, 10:29 AM
I haven't heard of either... do tell :)
Bearygood
04-27-2008, 02:41 PM
Evening Primrose Oil is an Omega 6. Very different than Omega 3 (fish oil and flax). You have to be careful when indulging in Omega 6 and 9 supplements as overdoing these can cause problems.